Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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MillyT 07/10/2018

Hi,

My name is Milly, and I'm not sure if this is against the website's terms of service (I apologise if it is, and I'll take it down if it is), but I'm looking to maybe start up a group chat for young adults with PKD.

I've found that most people are diagnosed with PKD a little later in life, and I would love to meet and keep in touch with other young adults who are going through similar experiences. My family history has quite a young average age for total kidney failure, with an average age of 35.

I was diagnosed when I was 25, and I got this condition from my mum's side of the family. I always feel awkward talking about this with my mum (I get the feeling she doesn't like talking about PKD with me because I think she feels some guilt for passing it on to me)

I have friends who want to understand, but in a way I don't know that they will ever fully get it.

I was thinking of maybe starting up a group chat on whatsapp - which is a mobile app used for chat. Would anyone maybe be interested in something like that?

Tisasecret 07/10/2018

I'd be up for this! It's so difficult trying to find friends who understand. The biggest issue I've found is that people assume you can't do anything yourself so treat you like a kid

MillyT 07/10/2018

Yay! I'll send you a private message Tisa

I've made a group, with an invite link

{EDITED - removed the link due to spam, message me for the link}

Bree_h7 07/13/2018

Hi! My name is Bree and I'm 18. I was diagnosed when I was 10 and would love to chat with you. (:

MillyT 07/13/2018

Hi Bree! Feel free to follow the link above to join the WhatsApp chat :)

At the moment it's just me :P because people don't seem to log on here all that often.

I've invited a few people by private message on this site, so they'll reply eventually

Jackiebaby 07/27/2018

Hi Milly nice to meet you it's great to talk to sum1 who has the same illness as urself I'm 34 my name is Jackie I was diagnosed at a very young age and got it from my mum's side aswell ..my mum has went through a kidney transplant at 43 and she's 62 now kidney still working great my doctor said I'm Gona go thru same thing as my mum it's so scary ..I'm having a hard time with kidney infections the last 2 months I agree with u you get support but feel like no1 understands how u feel xx

MillyT 07/28/2018

Hi Jacky, we'd love to have you join us,

We have about 15 members now (currently between the ages of 18 and 40) and it's a great group!

All you need to do is download WhatsApp from the app store and follow the link:

https://chat.whatsapp.com/0mZEjCQEZauGjNgQvT0eFs

Smoore39 07/29/2018

I was diagnosed at 29, and am now 41. Ive been through hell and back. i would love to have friends to talk with.

Bluespark 09/09/2018

Hi MillyT,

I just joined Daily Strength looking for other people with PKD like me because I feel alone with this disease. I was diagnosed with PKD when I was in my 20’s and my doctor brushed it off like it was nothing so for years I didn’t think much of it until recently. Now, I’m realizing how serious it is and trying to do everything I can to help slow down the progression. I have a new nephrologist and he mentioned Tolvaptan. A newly approved drug. I have mixed opinions from family and friends either to take it and don’t take it. I’m torn.

I’m in my late 40’s and trying to deal with this and keeping positive. I also see a naturopathic doctor.

I can’t temember what my GFR count is at this time and should be getting that info tomorrow from my neph. Am I able to join your support group?

Thanks

MillyT 09/09/2018

Hi Bluespark,

The group is meant mainly for young adults in their 20s or 30s.

There are some really great and very active groups on Facebook, have you tried there?

puppy81 03/05/2019

Hi Milly,

I am 38, was diagnosed at 29, and got PKD from my dad's side of family. Only issue I face until now is chronic back pain. I would love to find support from others in the same boat. Can I join this group?

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